3The Diversity of Students with Disabilities

This chapter describes the tremendous diversity that characterizes students with disabilities. Most of these students are eligible to receive special education services provided by the public schools. Yet, as this chapter shows, one cannot really speak of them as a group in a meaningful way, except perhaps with respect to the rights that all are accorded under the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) by virtue of their having a disability.

Some students with disabilities are never taken out of general education classrooms; others never enter a regular school building. Some have very mild disabilities observed only in school settings; others have multiple severe disabilities that affect many aspects of their lives. Some spend only minutes each week with a specially trained teacher, others the whole day. Some graduate from high school with a full academic courseload and go on to highly competitive colleges; others drop out of high school entirely; and still others receive special diplomas or certificates of attendance. Some have parents who are deeply involved in advocating and planning their individualized programs; others have parents who have never attended an IEP meeting.

Meaningful discussion of standards, curriculum, assessment, and outcomes cannot occur without some attention to the varied characteristics of these large numbers of children. This chapter examines how their extraordinary diversity complicates efforts to identify and categorize children with disabilities and to design effective educational policies for them. It also analyzes how disability variously affects the school experiences of these students, the roles their parents play in that schooling, and the possible implications for standards-based reform.

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Educating One and All: Students with Disabilities and Standards-Based Reform . Washington, DC: The National Academies Press,
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3
The Diversity of Students with Disabilities
This chapter describes the tremendous diversity that characterizes students with disabilities. Most of these students are eligible to receive special education services provided by the public schools. Yet, as this chapter shows, one cannot really speak of them as a group in a meaningful way, except perhaps with respect to the rights that all are accorded under the Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) by virtue of their having a disability.
Some students with disabilities are never taken out of general education classrooms; others never enter a regular school building. Some have very mild disabilities observed only in school settings; others have multiple severe disabilities that affect many aspects of their lives. Some spend only minutes each week with a specially trained teacher, others the whole day. Some graduate from high school with a full academic courseload and go on to highly competitive colleges; others drop out of high school entirely; and still others receive special diplomas or certificates of attendance. Some have parents who are deeply involved in advocating and planning their individualized programs; others have parents who have never attended an IEP meeting.
Meaningful discussion of standards, curriculum, assessment, and outcomes cannot occur without some attention to the varied characteristics of these large numbers of children. This chapter examines how their extraordinary diversity complicates efforts to identify and categorize children with disabilities and to design effective educational policies for them. It also analyzes how disability variously affects the school experiences of these students, the roles their parents play in that schooling, and the possible implications for standards-based reform.

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WHO QUALIFIES FOR SPECIAL EDUCATION?
Identification
The process of identifying students with disabilities is important because it determines who among the general student population is entitled to unique and specific legal and educational rights as well as access to extra resources and services. As explained in Chapter 2, these rights involve extensive due process protections, designed to ensure fundamental fairness in all aspects of the identification and placement of students with disabilities and to prevent misclassification.
Once a child is identified as having a disability, then a determination is made as to whether he or she qualifies for special education and related services. Under the IDEA, eligibility for special education services is based on two criteria: first, the student must meet the criteria for at least one of the 13 disabilities recognized in the IDEA (or the counterpart categories in state law) (Reschly, 1987a) and, second, the student must require special education or related services in order to receive an appropriate education (Board of Education of the Hendrick Hudson Central School District v. Rowley, 458 U.S. 176, 1982; Reschly, 1987a). According to the most recent data collected by the U.S. Department of Education (1996), approximately 4.7 million children between the ages of 6 and 17 qualified for special education services in school year 1994–95; this represents 10.4 percent of the total student population.
This two-part definition means that not all students with disabilities are eligible to receive special education services. For example, students with medical or physical disabilities do not qualify for special education unless they also demonstrate educational need. These children are still protected by Section 504 of the Rehabilitation Act of 1973, which governs all publicly supported agencies. This statute entitles students with disabilities to reasonable accommodations in educational settings to permit them to overcome impairments in critical life activities—even if they do not qualify for special education services. Currently the number of these students, who are covered by Section 504 but are not in special education, is unknown. 1 Nevertheless, the legal rights accorded them have the potential to affect the implementation of standards-based reform. For example, an increase in the number of Section 504-eligible students requesting accommodated assessments under standards-based reform would complicate interpretations of the meaning of assessment data.
Some children enter kindergarten already identified and receiving special education services. Many others are identified in their first few years of elementary school because they encounter difficulties in general education classrooms.
1
Available data about the numbers and characteristics of children with disabilities, which are discussed in this chapter, are collected for IDEA-eligible children and thus do not include noneligible students with disabilities.

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The process of identifying students with disabilities and determining their eligibility for special education typically involves three steps: referral, evaluation, and placement. Referral (usually by teachers) is the primary method through which children begin to be considered for a disability diagnosis. Most of these children are referred by their teachers for "repeatedly poor academic performance or poor social adjustment" (Heller et al., 1982:38). Thus, the performance of these students suggests they may need special education services, but they will qualify only if they are found to have a disability.
The IDEA is explicit and detailed about testing and assessment procedures used to qualify students for special education. A number of legislative provisions are designed to protect students and ensure the fair, nondiscriminatory use of tests. These provisions stipulate that decisions about children must be based on more than a single test, that tests must be validated for the purpose for which they are used, that students must be assessed in all areas related to a suspected disability, and that evaluations must be made by a multidisciplinary team. Children are generally tested in one-to-one situations with various school professionals (e.g., a school psychologist, an occupational therapist, a speech and language therapist) on tests that can be individually adapted to match the child's level. This type of highly individualized testing differs considerably from the large-scale, group-administered assessments usually tied to standards-based reforms.
The costs associated with conducting eligibility and other mandated assessments have raised concern. Data from several finance studies (Chambers and Parrish, 1983; Moore et al., 1988) indicate that these initial assessments, as well as the requisite triennial reevaluations of students, are very expensive, each costing an estimated $2,000 (Chaikind et al., 1993). Furthermore, research indicates that far too often these evaluations are used to classify a student within a specific diagnostic category rather than to determine specific instructional interventions (Merrill, 1990; Shinn et al., 1988; Smith, 1990).
If both the disability diagnosis and special education need are confirmed, then the student has rights to an individualized education program (IEP) designed to improve educational performance and expand opportunities. Evaluation results are used to develop an IEP that specifies the general goals and particular instructional objectives for the child; results are also used to design instruction and related services and to monitor the child's progress toward objectives and goals. A yearly meeting must be held to update and revise the IEP. Every three years, a student goes through a complete reevaluation; a battery of tests and assessments is again given by a multidisciplinary team and an eligibility meeting held to determine whether the student still has a disability and requires special education services.
Thus, students can and do move into and out of the special education system as they pass through the elementary and secondary school years. Little is known about the average length of time students stay in the system, but data indicate considerable movement. Available data suggest that, over a 1-year period at the

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secondary level, about 4 to 5 percent of eligible students are declassified and return to general education full time (Wagner et al., 1991; U.S. Department of Education, 1996). One longitudinal study of elementary schools in three urban districts suggested a slightly higher declassification rate during elementary school of 17 percent over a 2-year period (Walker et al., 1988).2
National enrollment data by age cohort suggest that enrollments in special education increase substantially between ages 6 and 8, peak for children at ages 9 and 10, and drop off steadily as students get older. This pattern varies, however, across disability categories, with some enrollments remaining relatively stable, whereas others (e.g., speech and language) decrease steadily with increasing age.
Special education referral rates can be affected by other policies and practices in a school system. Some have argued, for example, that, in some schools and districts, policies that raise the consequences tied to test scores have led to increased numbers of students being identified as having a disability (Allington and McGill-Franzen, 1992), since special education students, many of whom tend to score lower, are commonly excluded from school-wide reporting of test scores. The availability of other special programs, like remedial reading and Title I services, can affect the number of students referred for special education (Keogh and MacMillan, 1996). Others have suggested that fiscal incentives, such as basing allocations on counts of students with disabilities, can directly influence the number of students who get referred and placed in special education (Mehan, 1995). In a climate of reform aimed at raising academic standards, many are concerned that special education referral rates may go up if children with disabilities are exempted from certain aspects of reform or treated differently for accountability purposes. Unfortunately, at the current time, no systematic data are available on referral or placement rates that would allow monitoring of these trends over time.
Defining Disability
A number of comprehensive systems exist for classifying various kinds of disabilities, and these have influenced classification in special education to varying degrees (American Psychiatric Association, 1994; Luckasson et al., 1992; MacMillan and Reschly, in press; Reschly, 1992; World Health Organization, 1994). There is, however, no official special education classification system that is used uniformly across U.S. states and regions.
Thirteen disabilities are mentioned in the federal IDEA and defined in the accompanying regulations (IDEA 1991, 34 C.F.R. 300.7). Box 3-1 shows the federal definitions of disability categories along with the additional regulatory criteria for SLD. Brief definitions are provided for the following categories of disabilities: autism, deaf-blindness, deafness, hearing impairment, mental retar-
2
In this study, students classified with speech and language disorders and specific learning disabilities were the most likely to move out of special education.

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BOX 3-1 Definitions of Disabilities in Federal Regulations
300.7 Children with disabilities
(a)(1) As used in this part the term "children with disabilities" means those children evaluated in accordance with ßß300.530–300.534 as having mental retardation, hearing impairments including deafness, speech or language impairments, visual impairments including blindness, serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, other health impairments, specific learning disabilities, deaf-blindness, or multiple disabilities, and who because of those impairments need special education and related services.
(b) The terms used in this definition are defined as follows:
(1) "Autism" means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child's educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child's educational performance is adversely affected primarily because the child has a serious emotional disturbance, as defined in paragraph (b)(9) of this section.
(2) "Deaf-blindness" means concomitant hearing and visual impairments, the combination of which causes such severe communication and other developmental and educational problems that they cannot be accommodated in special education programs solely for children with deafness or children with blindness.
(3) "Deafness" means a hearing impairment that is so severe that the child is impaired in processing linguistic information through hearing, with or without amplification, that adversely affects a child's educational performance.
(4) "Hearing impairment" means an impairment in hearing, whether permanent or fluctuating, that adversely affects a child's educational performance but that is not included under the definition of deafness in this section.
(5) "Mental retardation" means significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period that adversely affects a child's educational performance.
(6) "Multiple disabilities" means concomitant impairments (such as mental retardation-blindness, mental retardation-orthopedic impairment, etc.), the combination of which causes such severe educational problems that they cannot be accommodated in special education programs solely for one of the impairments. The term does not include deaf-blindness.

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(7) ''Orthopedic impairment" means a severe orthopedic impairment that adversely affects a child's educational performance. The term includes impairments caused by congenital anomaly (e.g., clubfoot, absence of some member, etc.), impairments caused by disease (e.g., poliomyelitis, bone tuberculosis, etc.), and impairments from other causes (e.g., cerebral palsy, amputations, and fractures or burns that cause contractures).
(8) "Other health impairment" means having limited strength, vitality or alertness, due to chronic or acute health problems such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes that adversely affects a child's educational performance.
(9) "Serious emotional disturbance" is defined as follows:
(i) The term means a condition exhibiting one or more of the following characteristics over a long period of time and to a marked degree that adversely affects a child's educational performance—
(A) An inability to learn that cannot be explained by intellectual, sensory, or health factors;
(B) An inability to build or maintain satisfactory interpersonal relationships with peers and teachers;
(C) Inappropriate types of behavior or feelings under normal circumstances;
(D) A general pervasive mood of unhappiness or depression; or
(E) A tendency to develop physical symptoms or fears associated with personal or school problems.
(ii) The term includes schizophrenia. The term does not apply to children who are socially maladjusted, unless it is determined that they have a serious emotional disturbance.
(10) "Specific learning disability" means a disorder in one or more of the basic psychological processes involved in understanding or in using language, spoken or written, that may manifest itself in an imperfect ability to listen, think, speak, read, write, spell, or to do mathematical calculations. The term includes such conditions as perceptual disabilities, brain injury, minimal brain dysfunction, dyslexia, and developmental aphasia. The term does not apply to children who have learning problems that are primarily the result of visual, hearing, or motor disabilities, of mental retardation, of emotional disturbance, or of environmental, cultural, or economic disadvantage.
(11) "Speech or language impairment" means a communication disorder such as stuttering, impaired articulation, a language impairment, or a voice impairment that adversely affects a child's educational performance.

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(12) "Traumatic brain injury" means an acquired injury to the brain caused by an external physical force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child's educational performance. The term applies to open or closed head injuries resulting in impairments in one or more areas, such as cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual and motor abilities; psychosocial behavior; physical functions; information processing; and speech. The term does not apply to brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma.
(13) "Visual impairment including blindness" means an impairment in vision that, even with correction, adversely affects a child's educational performance. The term includes both partial sight and blindness.
§ 300.541 Criteria for determining the existence of a specific learning disability.
(a) A team may determine that a child has a specific learning disability if—
(1) The child does not achieve commensurate with his or her age and ability levels in one or more of the areas listed in paragraph (a)(2) of this section, when provided with learning experiences appropriate for the child's age and ability levels; and
(2) The team finds that a child has a severe discrepancy between achievement and intellectual ability in one or more of the following areas—
(i) Oral expression;
(ii) Listening comprehension;
(iii) Written expression;
(iv) Basic reading skill;
(v) Reading comprehension;
(vi) Mathematics calculation; or
(vii) Mathematics reasoning.
(b) The team may not identify a child as having a specific learning disability if the severe discrepancy between ability and achievement is primarily the result of—
(1) A visual hearing, or motor impairment;
(2) Mental retardation;
(3) Emotional disturbance; or
(4) Environmental, cultural or economic disadvantage.
(20 U.S.C. 1411 note).

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dation (MR), multiple disabilities, orthopedic impairment, other health impairment, serious emotional disturbance (SED), specific learning disability (SLD), speech or language impairment (Sp/L), traumatic brain injury, and visual impairment. Classification criteria are not provided for any of these disabilities except learning disabilities (see IDEA 1991, 34 CFR 300.541).
States and school districts do not have to adopt the disability categories in the federal law and regulations. Indeed, classification practices vary significantly from place to place, including names for categories, key dimensions on which the diagnosis is made, and criteria for eligibility determination (Mercer et al., 1990; Patrick and Reschly, 1982; Singer et al., 1989; Smith et al., 1988). These differences have the greatest impact on students with mild disabilities. As a result, it is entirely possible for students with identical characteristics to be diagnosed as having a disability in one state but not in another, or to have the categorical designation change with a move across state lines (Box 3-2).
Many reasons have been given for the high degree of variability in the classification rates. Some of this variation stems from the different ways that the law has been implemented or that professional practice has been conducted in different jurisdictions. States and districts differ in referral practices, effectiveness of child-find programs, and definitions of disability used. In addition, identification rates are affected by factors such as the strength of professional and special interest groups, the proclivity and capacity of parents to seek services, the availability and cost of services, the stigma attached to various disability designations, and the history of litigation in different places (Singer et al., 1989).
Severity of Disabilities
The degree of an individual's disability can range from mild to severe within a category. This means that students who may be considered as having a specific disability, such as learning disability or mental retardation, can be very different from one another. Severity is influenced by: (a) the size of the deficit(s) in behavior along such key dimensions as intelligence, academic achievement, communication/language, motor skills, and emotional adjustment; (b) the number of areas in which there are deficits; and (c) the complexity of developing educational interventions. The adjectives mild, moderate, and severe are usually used to denote the degree of severity of disabilities.
People with mild disabilities typically have smaller deficits on the key dimensions, have deficits in fewer areas, and can function without assistance in most normal daily activities. Most students with mild disabilities demonstrate no evidence of physical or health anomalies that cause deficits in behavior. For this reason, mild disabilities are largely a school-age phenomenon. Identification occurs after school entrance through a preplacement evaluation, which usually occurs because a teacher has referred the child due to severe and chronic achievement problems (Reschly, 1987b). Persons with mild disabilities typically require

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BOX 3-2 State Variation in Classification Policies
States use diverse classification practices in special education. The category of mental retardation illustrates some of these differences. In the MR category, enormous differences exist among states in terminology (some of the terms used to refer to mental retardation include mental handicap, mental disability, and significantly limited intellectual capacity), key dimensions (e.g., some states do not include adaptive behavior in the conceptual definition), and classification criteria (e.g., the IQ score criterion varies from a low of 69 to a high of 85).
State differences have the greatest impact on students with mild disabilities; prevalence differences are negligible for the more severe disabilities. Consider these prevalence figures: SLD varies from 2.86 percent in Georgia to 9.27 percent in Massachusetts; MR varies from 0.31 percent in New Jersey to 3.11 percent in Alabama; Sp/L varies from 1.28 percent in Hawaii to 3.94 percent in New Jersey; and SED varies from 0.05 percent in Mississippi to 2.06 percent in Connecticut. To cite another example, the Sp/L prevalence in New York is only 1.36 percent, whereas in the adjacent state of New Jersey it is nearly 4 percent (U.S. Department of Education, 1996:A-40).
The idea that such variations could reflect genuine differences in student populations stretches the imagination. It is highly unlikely that there are over nine times as many students with mental retardation in Alabama as New Jersey; that there are over three times as many students with SLD in Massachusetts as in Georgia; or that there are 40 times as many students with SED in Connecticut as in Mississippi. State prevalence of all disabilities for children and youth ages 6 to 17 vary from a low of 7.34 percent in Hawaii to 14.98 percent in Massachusetts (U.S. Department of Education, 1996). These variations are more likely to be related to unique state-by-state practices regarding how children and youth are identified as disabled than to real differences in student populations.
part-time special education programs that are delivered by special resource teachers or in special classes for part of the school day. During the adult years, the vast majority of these persons will not be officially designated as having a disability and will become self-supporting, independently functioning citizens in the community. Their needs for supportive services as adults are generally intermittent and restricted to particular activities or events.
Because a disability is mild does not mean that it is trivial or that it magically disappears at age 18 or 21. Students with SLD, for example, are seriously impaired in one of the most important developmental tasks in a technologically

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complex society: acquiring literacy skills and using them to master bodies of knowledge. Poor reading skills in particular constitute formidable barriers to academic progress and significantly limit adult career opportunities.
People with disabilities at the moderate to severe levels typically have a large deficit on at least one of the important behavioral dimensions, as well as moderate to large deficits in one or more of the other dimensions. These deficits tend to have a biological or physiological basis, and affected persons usually carry physical symptoms that influence their appearance. Disabilities at the more severe levels are typically diagnosed initially in the preschool years, often by medical personnel. During the school-age years, people with moderate or severe disabilities typically require assistance with certain daily living activities, such as self-help skills, mobility in the community, basic communication skills, and recreation. Special education programs for these students usually involve extensive assistance, whether in special classes with a very low student-to-teacher ratio (e.g., 5:1) or in general education classrooms with a full-time teacher or aide. Most people with disabilities at the moderate or severe level require lifelong assistance with one or more of the everyday activities of work, recreation, mobility, and self-care.
People with disabilities at the most severe level typically have large deficits, often in two or more areas, that result in poor educational performance and require extensive and consistent support. Mental retardation is often a primary disability for people with severe multiple disabilities; for example, approximately 60 percent of people with cerebral palsy have mental retardation (Batshaw and Perret, 1986). In educational contexts, the focus of defining severe disabilities has moved from describing negative behaviors (e.g., self-mutilation, self-stimulation, loss of contact with reality) to describing developmental levels of functioning. This latter approach emphasizes the discrepancy between what is expected in "normal development" and actual student performance (e.g., a student's developmental level is 50 percent lower than what is expected for his or her chronological age) (Abt Associates, 1974; Justen, 1976). Individuals with the most severe disabilities are far below normal development and require continuing assistance, in childhood and adult years, with very basic self-survival skills.
Disability Dimensions
The 13 disability categories in the federal regulations are based to varying degrees on 8 dimensions of behavior or individual characteristics: academic achievement, intelligence, adaptive behavior, emotional adjustment, communication/language, sensory status, motor skills, and health status, (Reschly, 1987b). As explained in the following pages, each dimension affects how children are identified and served in special education.
Academic Achievement. Assessment of achievement in such core academic

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subjects as reading, writing, and math is nearly always part of the full and individual evaluation provided to children referred for special education, regardless of which of the 13 categories of disability is being considered. A high percentage of children in special education exhibit low achievement in at least one academic area.
Achievement as a dimension of disability has important implications for standards-based reform. Serious debate exists about the relative importance of traditional academic literacy skills for students with severe disabilities and for many middle- and high-school-age students with moderate and mild disabilities. The majority of students with severe disabilities will not reach basic levels of academic literacy as they are understood in standards-based reforms. Furthermore, students with mild disabilities may reach plateaus in academic achievement, or, if not actual plateaus, then stages in skill acquisition, at which further progress is extremely slow. As we discuss in Chapter 4, the low achievement of some children with disabilities raises difficult issues about whether an academically oriented curriculum is the most appropriate emphasis, particularly if it takes time away from teaching social and functional competencies and vocational skills.
Intelligence. General intellectual functioning is typically assessed as part of the evaluation for special education, usually with a standardized IQ test individually administered by a psychologist. Intellectual functioning is a key criteria for classifying students as MR and SLD in most states. Federal regulations define mental retardation as "significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior" (34 CFR 300.7). Federal regulations for diagnosing specific learning disabilities require that there be a "severe discrepancy between achievement and intellectual ability" (34 CFR 300.541); most states have established procedures for determining what constitutes a severe discrepancy. Recent research, however, has challenged the validity of using an intelligence-achievement discrepancy to define SLD (see Morison et al., 1996).
Although the meaning of the construct of intelligence continues to provoke debate, especially as it relates to achievement, some features of intelligence are reasonably well established. Intelligence is related to efficiency in information processing, the ability to learn abstract concepts, the spontaneous use of strategies to acquire and remember information and solve problems, and the capability to learn from incomplete instruction. Generally the lower the levels of intelligence (and achievement), the greater the need for more concrete, less abstract instruction that proceeds in small steps and includes ample demonstration and practice (Campione et al., 1982; Neisser et al., 1996). Intelligence is related to school performance and academic achievement, but the relationships are complex and difficult to separate (Neisser et al., 1996). Intelligence is both a predic-

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volvement (at home, through participation in school organizations, and through attendance at school events), number of school contacts, an index of school satisfaction, and a measure of parental academic expectations for their child. Parents of students with disabilities showed approximately similar levels of involvement as other parents. School dissatisfaction, however, appeared to be higher among parents of students with disabilities, especially parents of students with emotional problems. As anticipated, because the question on expectations was limited to academic alternatives, parents of students with disabilities showed considerably lower academic expectations overall, although there is quite a bit of variation depending on the type of disability.
The effects of these parental factors, as well as other relevant demographic factors, on fourth grade achievement in reading and math were examined using a model that also controls for previous educational achievement (as measured by third grade test scores). These analyses (see regression results in Appendix C) indicate that parental expectations for their children's education were a powerful predictor of achievement in both reading and math after controlling for race, gender, disability, and other family characteristics. For reading, the only other significant parental variable was frequency of school contacts, which was negatively related to reading achievement for the reasons explained above.
For math scores, several other variables were important. Parental involvement both at home and through school organizations had a positive and significant relationship with math achievement. In addition, higher school dissatisfaction had a negative relationship with lower math scores.
Although small sample sizes preclude doing these analyses exclusively for students with disabilities, the model does control for disability and, as noted previously, disability in general does not have a significant effect on growth in achievement (i.e., once previous achievement is considered).
Parental Involvement in the Special Education Process
As discussed in Chapter 2, the IDEA gives parents of students with disabilities important roles and responsibilities in the education of their children. Of particular note are the opportunities for parents to work with professionals to develop the IEP for their child.
Systematic research on the nature and quality of parent participation in the education of students with disabilities is very limited. As the point in the special education process at which parents and professionals have the greatest opportunity for collaboration and substantive input, the IEP conference has been the focus of much of the available research. Both research and parent reports (National Council on Disability, 1995) suggest that, for some parents, the IEP process has worked well: they are actively involved in key decisions regarding the education of their children, such as what goals the teacher should concentrate on and in what classroom setting the child should be educated. One mother's testimony

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describes her satisfaction with the IEP process (National Council on Disability, 1995:56): ''A key to Michael's success has been the teamwork of all the educational professionals involved in Michael's program. The IEP process has allowed us to carefully plan and individually tailor Michael's educational goals and objectives."13
Evidence indicates that for some parents, however, the IEP process is a less positive experience. Some have found themselves in an adversarial relationship with schools when they do not agree with the recommendations made by the educators. Other parents have not participated at all in the IEP process and may not even be aware of the special role they are entitled to play. No systematic national data are available on participation rates of parents in IEP meetings or other factors, such as the number of parents who challenge IEP decisions. However, results of recent field hearings suggest that weak parent participation in decisions about appropriate education may be one of the most neglected problems in special education (National Council on Disability, 1995).
Barriers to Participation
Research has identified several barriers to effective parent participation in the IEP process. These include low parent attendance, time constraints, use of education jargon by school professionals, the undervaluing of parental input by school professionals, and a lack of parent skills and information.
Low attendance by parents at IEP meetings is reported to be a widespread problem (Goldstein et al., 1980; Leyser, 1985; Polifka, 1981; Scanlon et al., 1981). Some studies have suggested that parents are not well informed about the IEP (Christenson et al., 1992a); for example, one survey of 325 parents of students with disabilities found that 30–40 percent of the parents did not know what an IEP was (Leyser, 1985).
Studies have shown that the time allotted for meeting and developing IEPs is relatively brief for the amount of substantive work to be done. One qualitative research study (Silverstein et al., 1992) found that IEP meetings took one hour, but others (Vaughn et al., 1988; Ysseldyke et al., 1982b; Silverstein et al., 1992) found the time to be of much shorter duration. Parents did not necessarily desire longer formal meetings but instead wanted more time to process information, make decisions, and gain additional knowledge.
Evidence also suggests that the use of technical language and jargon, in both reports and conversations, is a barrier for parents at multidisciplinary team meetings (National Council on Disability, 1995; Mehan et al., 1986; Roit and Pfohl, 1984; Weddig, 1984; Ysseldyke et al., 1982b). Even without jargon, written and oral
13
In the National Council on Disability Report of 1995, 400 witnesses, most of whom were parents or other family members of students with disabilities, testified in 10 field hearings across the United States on their experiences and recommendations for the IDEA.

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language can pose a barrier for parents of students with disabilities. Research has found that special education documents are written at a fifth to eight grade reading level, which may be too high for some disadvantaged or culturally different parents. Furthermore, if parents cannot understand critical documents, they may not actually be giving informed consent on important decisions (Lindle, 1992).
Yet another issue is the perception of some parents that school professionals are not responsive to their views during the IEP process. At the hearings held by the National Council on Disability (1995), many parents testified that they found the IEP process frustrating and intimidating, citing such problems as teachers who arrived at the meetings with completed IEPs or who did not respect their opinions on potential goals and objectives. Researchers have documented both superficial and low levels of parent involvement in the development of the IEP (Christenson et al., 1992a, Goldstein et al., 1980). As one mother testified, "I believe parents come to the IEP meeting as an unequal partner. Our signature means only that we were present at the meeting" (National Council on Disability, 1995:57).
Lack of good information about the sometimes complex IEP process appears to be one important reason why some parents of students with disabilities are not involved in educational decision making (Hoff et al., 1978; Goldstein et al., 1980; Leyser, 1985; Lindle, 1992). Research indicates that some parents lack familiarity with the IEP document and its contents (Leyser, 1985; McKinney and Horcutt, 1982). Even though some parents may not wish to participate in the decisions about their child's program, researchers have suggested that it is important that all parents be informed enough to choose the level of participation and to give meaningful consent (Turnbull and Turnbull, 1982, in press).
Special Needs of Minority and Poor Parents
Barriers to meaningful participation in educational decision making are often magnified for minority parents of students with disabilities, as well as for economically or educationally disadvantaged parents. Minority and poor parents may also encounter other obstacles stemming from cultural differences, language barriers, and lower educational attainment. These obstacles warrant attention, since African American and Native American children tend to be identified for special education at somewhat higher rates than other groups, and since parents of children with disabilities tend to be more socioeconomically disadvantaged than parents in general.
The research base on minority issues in special education is narrow and consists largely of qualitative research (e.g., Harry, 1992b, 1992c; Harry et al., 1995). The available studies stress two features as central to the participation of minority parents in special education: (1) the influence of culture and socioeconomic status on the interactions between parents and professionals and (2) ineffective communication.

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Research suggests that the typical modes and logistics of interactions between parents and schools may not be well attuned to differences in culture and economic circumstances. Education meetings in the United States are often characterized by efficiency, organization, and formality, which may contrast with the slower, more personalized approaches of other cultures (Harry, 1992a). Logistical matters, such as transportation, child care, and work schedules, often become a deterrent for parents who cannot make the necessary arrangements to attend education meetings (Harry, 1992a). These logistical barriers are not specific to minority parents; indeed, they can create problems for any single-parent, low-income, immigrant, or homeless family.
Research has also emphasized the importance of oral and written communication in minority parent participation. Parents for whom English is not the primary language may have difficulty comprehending plain English, let alone the educational jargon that is often part of such meetings (Harry, 1992a, 1992b; and Harry et al., 1995). There is also evidence that other cultures may have different views of specific terms such as "disability" or "handicapped," which may present problems for parents who are trying to understand the exact nature of their child's disability (Harry 1992a, 1992c).
Written communication is the primary means of providing information, recording decisions, and procuring parental permission in special education. Documents are usually written in English at a middle-grade reading level, are presented to parents without much discussion, and contain many unfamiliar words. Harry (1992a) has suggested that the presence of an interpreter and a special education family liaison worker may help to remove barriers for minority families who have differences in languages, experiences, and expectations.
PARTICIPATION IN STANDARDS-BASED REFORM: ISSUES AND CASE EXAMPLES
As the preceding sections have illustrated, the characteristics of students with disabilities are very heterogeneous, and their variety affects how they currently participate in general education. One can reasonably assume that this heterogeneity will also affect the nature and level of their participation in standards-based reform. A carefully considered approach to participation is consistent with the individualization of curricular goals, instructional objectives, teaching methodology, and assessment of progress that characterizes special education practice and the interpretation of legal mandates. For a number of students with disabilities, the general education goals and instructional objectives associated with standards-based reforms are likely to be compatible with their individualized educational programs. Clearly, these students should participate in the standards, curriculum, instruction, and assessments associated with the standards-based reforms.
For some other students with disabilities, participation in the common standards and the general education curriculum is likely to require some modification

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or adaptations. For example, some students who need special education in only one academic area (e.g., mathematics) may be able to participate fully in all other standards but may require adaptations in mathematics standards and curricula. Other students may need to move through the curriculum at a slower pace, necessitating adaptations. Some students will need instruction in areas not covered by the common standards. A small proportion of students with severe disabilities may require a curriculum that is very different from the curriculum based on the common standards. Issues related to standards, curriculum, and instruction are discussed further in Chapter 4.
Some students with disabilities will be able to participate fully in the common standards but will require adaptations or accommodations to participate in common assessments. Because of the nature of their disabilities, some of these children simply cannot take the tests as designed, for example because they cannot hold a pencil or see the test booklet. These children require testing accommodations, such as braille or large print versions of the test, oral reading of directions, use of a typewriter or computer, or a method to point to correct answers. Other students, such as some with learning disabilities, sometimes need accommodations such as extended time, more breaks during testing sessions, or a separate setting in which to take the test. Chapter 5 focuses on issues in the assessment of students with disabilities participating in standards-based reforms.
For an individual student with a disability, the curricular emphasis in the IEP will be one of the most important considerations in determining whether the common content standards and assessment procedures will be suitable. Depending on the number of behavioral dimensions affected by the disability and the severity of those effects, students' IEPs may or may not include goals that are consistent with standards-based reform. In the section below we present three case examples to illustrate these principles.
Case I: Student with a Mild Disability
Mary is a tenth grade student with an attention deficit disorder and a learning disability in the areas of reading recognition and reading comprehension.14 She currently reads at the fourth grade level in one-to-one assessment trials with her resource room teacher. Her reading skills continue to improve with individualized, one-to-one instruction, but the pace of improvement is slow. The time she must devote to reading instruction in her daily schedule means there are other academic courses she cannot take.
In other academic areas, Mary performs at a below-average but passing level. Her mathematics skills, depending on how they are assessed, are near average for students her age. Her performance on measures of general intellectual functioning has varied within a narrow range, indicating low average overall abilities.
14
Although her name has been changed, the description of Mary is based on a real child.

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Overall, her motor abilities and adaptive behavior are normal; however, she has some difficulties with social skills and emotional adjustment. She does not react constructively to pressure to perform well or on timed academic exercises. She typically does very poorly on any kind of group-administered standardized test. She does considerably better on standardized tests if they are administered on a one-to-one basis or in a small group and on tests that do not require her to read complex narratives as part of solving problems. Mary's special education team and parents prefer that she be excused from group-administered standardized tests or that such tests be given to her in a small group setting with extended time limits.
Although the details vary from case to case, there are a relatively large number of students with cognitive disabilities like those described for Mary. Generally, these students do not have impairments on the dimensions of sensory acuity, motor skills, or health status. General intellectual functioning, speech/communication, and academic achievement typically are below average, but above the level that would lead to a diagnosis of mental retardation. Adaptive behavior in the sense of caring for one's self is normal or close to normal, but social skills generally are slightly below average, as is overall emotional adjustment.
Increasingly, over the last two decades, many students with these characteristics have been diagnosed as having specific learning disabilities in school settings, although there are many more students with some of these characteristics who are not referred and therefore never considered for special education eligibility. Indeed, depending on the state and, within states the school district, students like Mary may or may not be diagnosed as having a disability and qualify for special education.
The most difficult questions about participation in standards-based reform occur with students like Mary: students with real and significant educational problems that may or may not lead to a formal designation as having a disability. These students often devote some part of their school day to specially designed instruction to help remediate areas of academic difficulty; this makes it hard for them to participate fully in the rest of the curriculum and creates competing priorities for how they should spent their time in school.
Designation as having a disability triggers certain protections and rights under the IDEA and Section 504. Do these protections and rights include alternatives to the common curriculum, especially in areas of academic difficulty? Should they? Or is it more important that people with mild disabilities be included in the common curriculum, to ensure that the education system serves these students well and that they have access to curricula that meet high standards? If the answers to these questions are affirmative, then there is the further dilemma over assessment procedures: Should accommodations be available to students who read poorly, have difficulty meeting time limits, or are inattentive in larger groups? Accommodations almost inevitably change the assessment task in significant and often unknown ways, as we discuss further in Chapter 5.

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Case II: Student with Multiple Disabilities of Varying Severity
Jerry (also a real child with the name changed) was diagnosed at the age of 6 months at a university clinic as having cerebral palsy that affected all four limbs as well as speech production. Preschool services for children with disabilities were provided beginning at age 1 and continuing until Jerry entered kindergarten in a general education setting. Although assessments of intelligence and achievement are difficult due to Jerry's disabilities related to movement and speech production, it appears that he has at least average cognitive ability. Jerry's IEP specifies that he receive the services of a one-to-one instructional assistant in the classroom to aid him with communication and mobility activities. Jerry also receives the related services of physical, occupational, and speech/language therapy. He participates in all academic activities in his first grade classroom and is acquiring academic skills in core areas such as reading and math at an average to above-average level. He is pursuing the goals in the general education curriculum adopted by his school district for children his age.
From what is known about Jerry, the common curriculum appears suitable for his abilities, and he is likely to make good progress in acquiring academic skills. Assessment of his skills and abilities is difficult; for example, he cannot write his answers because of his severe motor skills impairments. Testing accommodations are likely to require more time as well as help from his instructional assistant. Few would argue about whether he should receive such accommodations in assessment, but the meaning of his accommodated performance in relation to the performance of other students is uncertain. Furthermore, the way in which his performance should be included in high-stakes comparisons involving his classroom, school attendance center, or school district is even more uncertain. But Jerry clearly should have access to the general education curriculum, and assessment of progress in that curriculum is part and parcel of that access. Many would argue that, unless he is included in such assessments, general education will not be held accountable for his progress. Resolution of the problems associated with Jerry's participation in the standards-based assessments will not be easy or straightforward. But resolution is necessary, and different options will have varying effects on him and his school.
Students like Jerry with normal cognitive ability and severe motor or sensory impairments are extremely rare—well under 1 percent of the overall student population. No matter what is done for Jerry and students like him, there will be little effect on the high-stakes comparisons of performance at the building, district, or state levels; the much larger group of students with mild to moderate cognitive disabilities, who make up 5–8 percent of the overall student population, have the potential to affect these high-stakes comparisons.
Case III: Student with Multiple Severe Disabilities
In any school district of more than a few hundred students, there are likely

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to be children with multiple severe disabilities who perform far below their age peers on several important dimensions of behavior. The number of disabilities, the severe discrepancies from developmental norms, and the complexity of their special education needs are likely to render at least some of them unable to participate in any meaningful way in the activities associated with standards-based reform. Consider the case of Tom, a child who has multiple and very severe disabilities, including extremely limited mobility, deafness, and profound mental retardation. He is not able to learn even rudimentary skills associated with the standard curriculum, e.g., basic letter-sound relationships, recognition of words by sight, knowledge of basic temporal relationships. He is nevertheless entitled by law to special education and related services. Tom's IEP might address such fundamental learning activities such as basic self-care and communication skills. Tom is part of the public school population to whom standards-based reforms are applied and is ostensibly included in the legislative language that declares "All children can learn and achieve to high standards." Extremely rare cases like this present a challenge to the inclusive language of "all" in standards-based reforms.
Issues
As noted throughout this chapter, there are enormous variations in the population of students classified as having disabilities. A very small number of students—those with the most severe disabilities, such as Tom—will not be able to participate fully in all aspects of the general education curriculum, the common academic standards embedded in that curriculum, or the common assessment procedures. For some, full participation in the general education curriculum and common academic standards will be feasible, but some modification such as assessment accommodations will be required to overcome obvious impediments due to sensory or motor impairments (such as the case of Jerry). Many students with mild disabilities can be expected to participate in the common curriculum for most, if not all, parts of their educational programs. For many students with disabilities, however, the extent of participation in the common standards-based curriculum and assessments is likely to depend on the interpretation of legal rights and assumptions about the risks and benefits of participation (such as the case of Mary) as well as the nature of the standards. These students may—and we emphasize may because the legal requirements are not clear—have legal rights to assessment accommodations and, arguably, entitlement to the curriculum specified in their IEPs rather than the curriculum specified in standards-based reforms.
Two particularly complex issues regarding the participation of all students with disabilities in standards-based reforms are considered further in Chapters 4 and 5: the extent of participation in the general education curriculum and the need for accommodations in standards-based assessment activities.

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CONCLUSIONS
Several themes emerge from this discussion of student identification, disability characteristics, and educational needs.
The number of students with disabilities is sizable, and they are extremely heterogeneous. More than 5 million school-age students—or about 10 percent of the school-age population—qualify for special education services, constituting a significant population. Students served by special education vary widely in severity of disability, educational goals, and participation in the general education curriculum. These variations affect many aspects of their schooling. In addition, there is evidence that students with disabilities as a group are at socioeconomic disadvantage compared with their peers without disabilities.
Currently the criteria for identifying many of the categories of disability are not well defined or reliable, even though these criteria affect important decisions about which students are eligible for legal rights and special education services under the IDEA. Disability categories are defined largely by state policies; identification rates vary a great deal from state to state, and very different criteria are used in different places. Interpretation and implementation of the disability criteria is largely a district-level concern; no systematic data are available about how the criteria may be interpreted and therefore which students get into which categories and on what basis. Currently, to qualify for special education, a yes-no determination of the presence of a disability has to be made, although disability varies along a number of dimensions, each of which is best described as a continuum of severity. Clear-cut decisions about which children should be served are not easily made. Some children who qualify for special education in one school would not qualify elsewhere. Conversely, some children are not identified as disabled who are likely to have the same educational needs as those who are identified. The implications of standards-based reforms for these children—low-achieving but not currently identified for special education—is beyond the scope of this committee's work but nevertheless should be considered in implementing and monitoring the effects of standards-based reforms.
Meaningful discussion of standards, curriculum, assessment, and outcomes cannot occur without thoughtful consideration of the varied characteristics of the large and diverse number of students with disabilities. The nature of the participation of students with disabilities in the common aspects of standards-based reform is likely to vary depending on their individual characteristics and educational needs. Over the past 20 years, students with disabilities have been participating more and more in general education classrooms and curricula. For some students with disabilities, participation in the general education curricula and therefore in standards-based reforms is already a reality and will require minor or no individualized adaptations. The small group of children with very severe cognitive disabilities will present particular challenges for standards-based reforms and are likely to require major adaptations to standards-based curricula and as-

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sessments. For another group—largely those with mild to moderate cognitive disabilities—participation in common standards and assessments can be expected to increase considerably as the frameworks are put into place. These children may require some modifications to the common standards, curricula, or assessments to ensure compatibility of their individualized education programs with the standards frameworks.
The number of students with disabilities who may need accommodations or other modifications in standards and assessments is unknown and will depend on such factors as behavioral characteristics and severity of disability, extent of participation in the general curriculum, and the instructional needs of students. Nationally representative data are lacking about the population of students with disabilities on any of these factors. The need for accommodations and other modifications will also depend on the nature of a district's or state's particular content standards, performance standards, and assessments—which vary significantly from place to place.
The role of parents will be key in ensuring the successful participation of students with disabilities in standards-based reforms. Parental involvement and expectations are strongly related to the achievement of their children, even after taking into account the effects of related variables, such as parental education and socioeconomic status; these relationships appear to hold for students with and without disabilities. In addition, parents of students with disabilities have a unique role to play in the process of designing their children's educational programs. Although the IEP process is the cornerstone of parental involvement, evidence indicates that it has not worked well for all parents. Concerns regarding the IEP process are exacerbated for minority or economically disadvantaged parents. Resolving the barriers to parental involvement takes on even greater importance in the era of standards-based reform, particularly in light of the research evidence indicating its effects on improving achievement. The legal provisions guaranteeing the rights and responsibilities of parents in special education are potentially powerful tools that parents can use to bring about the successful integration of children with disabilities into a standards-based educational environment. At the same time, standards-based reform may place even greater demands on parents, in terms of decision-making responsibilities, participation requirements, and training and information needs.
Very few systematic, nationally representative data are available about students with disabilities. As a result, we know very little about the population served by special education—how many children move in and out of special education, how definitions of disability categories are interpreted by individual school staff, how many children are referred but not found eligible, how many have a disability but do not need special education, what the demographic characteristics of eligible children are, how many students complete full requirements for a diploma, how many leave school on some other basis, and so on. Counting and keeping track of data related to the disability status, outcomes, and perfor-

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mance of students with disabilities are complicated by a number of factors specific to this population—for example, many cannot take group-administered tests (usually the primary outcome measure) under standardized procedures, many split their time between general education classrooms and special education classrooms, some are served in separate schools not sampled in most data collection procedures, some do not remain with their age or grade cohort as they progress through school, and many move in and out of the special education system over time.
The exclusion of students with disabilities from these research and evaluation samples can affect the overall results of these studies. The results of any aggregated data pertaining to general education, and thus to standards-based reform, can be affected if these children are left out, especially since many students with disabilities have lower achievement. Furthermore, systematic, representative data are needed about the educational progress of students with disabilities relative to the larger group of general education students.
Without good data on such factors as special education referral and identification rates or graduation rates and types of diplomas, it will be hard to monitor some of the potential effects of standards-based reforms—both intended and unintended—for students with disabilities . Past experience has indicated that new policies often have systemwide effects that were not originally intended, such as increased dropout or retention rates. In addition, specific subgroups of children, such as those defined by gender or race/ethnicity, can be differentially affected. It will be very important to detect whether, for example, standards-based reforms are increasing the rates of referral to special education, changing the demographics of who gets identified, or affecting the dropout rates or types of diplomas obtained. Changes such as these have the potential to affect all students, not just those with disabilities.

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